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I took my usual Monday afternoon Avonex injection and I feel like crap right now. Some weeks are better than others but today isn’t a good one. I have a love hate relationship with my drug of choice, I am so lucky to have any drug that is fighting it however little % effectiveness but I hate the way it makes me feel and the pre-injection anxiety.

Something that I need to get off my chest is the current theme among MS patients is this, if your MS doesn’t have progressive in the title, then you aren’t progressive. I am very aware that MS can be more progressive in some people but I do take umbrage at the suggestion that relapse remitting is some sort of golden ticket in the MS world – it isn’t. We all progress, if were weren’t, then why take disease modifying treatments? Are they not taken to help slow progression? Did someone miss that bit of information? Why are the MS organisations not doing more to correct this? This is playing right into DWPs hands (following on from yesterday). During my assessment, she said oh you have RR like that means fine. We have treatments therefore we are fine, right? No, wrong.

I really don’t know from a general society point of view that the types of MS are helping us at all. In a lot of ways I wished the types were behind closed doors for the medical professionals.

Well it had to happen eventually, I burst into tears during my Nurse appointment this morning. She was lovely (always is). I tried to explain it as best I could in that I am finding adjusting to my label really hard. I am no different to what I was 10, 15, 20 years ago albeit a few newish symptoms over the last 8 years that helped seal the deal. Unfortunately now that I know what is wrong, so does everyone else. No one believed that I was genuinely unwell for all those years, treated like a freak literally and by people that I had wrongly assumed wouldn’t. So, now I have my diagnosis, rather than just saying, oh good we have a name for what has been happening and it doesn’t change anything as you have been ill for years, people are choosing to slap me round the face with it at every opportunity.

I am 41, 42 in June, to me I have things I want to do still, things I was doing that have ground to a halt because certain people would rather slap me round the face with a label. I am youngish person, lots of years left to contribute outside of my household. Yes, I have had one dream cruelly taken from me, Vet Nursing, however, Counselling is a different matter. I am halfway qualified, all I need is my 2 year Diploma. At the end of year 3 I informed my teacher that due to finances, I would need a year out. I was diagnosed in that time, since then, I contacted my teacher and explained my diagnosis and asked if she could give me a realistic outline of the course and what is involved so I could have a serious think and try to plan, get assistance to see me through. What did I get? Complete ignorance, not even a substandard response. Nothing. This from a Counsellor! Me thinks not all of her issues have been dealt with.

This is my point, the whole 2.5 years of studying I did, I HAD MS!! Good enough then I was, praised to hilt constantly. Good student. Now what am I? A wannabee with a degenerative disease. I reiterate, I was always that, we just didn’t know!! I need and want people to get over themselves, it isn’t happening to them, it is me this is wrecking and I am dealing with it, please join me won’t you?

The only people who have been supportive and great are the Veterinary Surgery, going there is like my safe haven. I am still me in their eyes and I feel like me too.

At the moment, I refuse point blank to assume the role of the MS label. Yes I have it but it has been part of me for a bloody long time and I was plodding along then so why can’t I plod along now?

I have a son to inspire and a life to live. It is not good to be sitting in a wheelchair in the future knowing that when you could do it you were stopped due to other peoples ridiculous perceptions.

I am Sam with MS but you are blah blah with a bad attitude!! I am here, deal with it.

It has been a while but I needed a break. A lot has happened but the last 2 days has shaken me not because I am surprised but because it has actually happened.

My Mum has lost her integrity and probably did a long time ago, in fact the day she got married to my step father. Unfortunately, when you find yourself young and from a broken home, you have to go along with your mum/dad’s choice of new partner and life. Even as a child you know when they are making a mistake and I did. She was making a cracker of a mistake and far worse than the first choice, I.e. my Dad. Then, if that wasn’t bad enough, you find out that he has kids, horrible kids. Seem fairly normal at first but then you realise they are self serving, self pitying, antagonistic little shits with enough baggage to rival an Airport, you bet I wanted to run.

i had made the wrong choice. At age 6 my parents decided it would be a great idea to ask me that question all children should never be asked, ‘who do you want to live with?’ I was/am a Daddy’s girl but I knew my Dad had nowhere to go and I was scared. My Mum I chose almost automatically but then who wouldn’t? I was effing 6!! Anyhoo, now, I am reaping that decision.

Since my MS diagnosis, my step family have literally walked in the opposite direction, proving what I always knew. This leaves my mum stuck well and truly in the hole she dug for herself. It is her Birthday very shortly and her wishes were for her to go out for a bite with me and my sister (half, we share our mum) our husbands and children. My step dad as usual pipes up and has to make sure Huey and doey have to come along (his kids, 45 and 41). Because of how I have been treated, I have retreated as I have no intention of being subjected to their behaviour, excuses and for it to be anything other than a celebratory birthday meal. My mum has arranged to go out with just me, hubby and son the week after.

I will have a relationship with my Mum come hell or highwater. I grew up without my Dad so I am under no circumstances growing old without my Mum.

By stepping back, I am keeping the peace for my Mum, the same position I had as a little girl. It is wrong to say nothing but the trouble it would cause is not worth it. I have paid lip-service to my supposed family for all these years so what can it hurt? Trouble is, now as adults it is all too clear how bad it is. I knew the control level he had but to the point where my own mother cannot tell them what utter bastards they are being towards her own daughter then I now know what a smart insightful girl I was back then.

I was always worried about not being academic but thanks to MS it has shown me that what I have you just don’t learn from books.

I started thinking about this post a while ago but just couldn’t start it. I have been struggling with every aspect of my life for a couple of months and it has prevented me from posting. I was worried that readers would think, blimey she is miserable, I don’t want to read etc. but today, I realised that it may be of some comfort to someone else thinking and feeling similar things. I must stop thinking negatively about what is completely normal in my situation.

To start with, I feel since diagnosis my health has deteriorated quite a lot and that is frightening and frustrating. Emotionally, I barely recognise myself whilst trying to dig the same old me out every day from the pit that MS is creating.

My future? Well, what can I say about this? I want and need a future that vaguely represents the me before but I have been confused, upset and again frustrated as many doors close due to reality and uncertainty. Facing the facts is hard and it is made all the more difficult when you and no one else can tell you what may happen as part of the disease progression.

This has in a way always been the case as being in limbo for an extraordinary amount of time has left me battered, unsure, untrusting and frightened.

I am leaving this blog as titled at the moment because although out of diagnostic limboland I am far from being out of life limbo.

I am becoming an annoying easily offended person. Not with everything, just MS related.

The forum is full of members and posts that just seem to rub me up the wrong way and I cannot figure out what is really going on. When I was an active counselling student, this would have made for very good criteria meeting homework but now I’m out of action, it is bothering me.

The posts aren’t personal to me so why am I finding myself tutting, rolling my eyes and not being able to help? Is it that I’ve disappeared up my own backside and feel that unless you feel about MS the way I see it you are wrong? No, that’s not me, I respect all views and how each individual person handles things. Am I projecting my own denial? May be, I just feel clueless about it all. What I do know is I’m genuinely hacked off and really need to stop going on there. I also miss Karen.

The last couple of weeks has seen two attempts at motivational, feel good posts. Thought appreciated but even those have ticked me off!! I hate being told, it could be worse and to view MS as something to think positive about. Er, excuse me, I am a positive person, I get on with my life, I do everything everyday to make sure the house still runs as a youngish family that we are. As for my Veterinary job, they will have to carry me out of there before I give up!

I refuse to live less able than I actually am just to make people feel better about my illness. MS, serious isn’t it? Well just you look and act more ill immediately so I can validate what I really think of you! NO is my simple polite answer. I live like this because I can. Yes it is bloody hard and inside I cry and scream so much my mum would break down if she knew the truth. So in short I am positive through my actions not just because I can sit and write a pretty little sodding paragraph and get kudos from members that want an MS diagnosis (I will say it again, why?) and don’t know what way is up right now!!

Blimey, it’s kicking off on the newly diagnosed, pre-diagnosis section of the forum.

A new member is causing quite a stir but I am finding it rather entertaining and sad at the same time. The very first post I admit to biting, politely mind you, and nothing came of it. I explained I was very tired and very sensitive and I should have stayed away.

Anyhoo, the last week has seen posts that can be described as angry, paranoid, accusatory, threatening and very antagonistic. I know I haven’t completed my counselling training but this person would make a good candidate for counselling. This is what I find sad. I can literally feel this person desperately trying to find an alternative diagnosis, grasping at any straw to change the outcome. Irritating other members to within an inch of our lives, only to want support and answers to questions not even the best Neuro could answer. They have zero social ability and I just am at a complete loss. I am ashamed to say, I have read and ignored every post since my blip.

Karen would be so good in this situation as I believe her knowledge would have helped quash her irrational paranoid thinking. This person wants us to put up with poor behaviour because of the suggestion we all have Lymes disease and should be tested immediately. Er, news flash numb nuts, it is tested for as standard, or so I believe.

I hope they find peace soon, as I am worried about newbies having their nervous first posts hijacked with very unacceptable comments and own agenda swings at anyone brave enough to admit they work for the NHS!!

I am too tired for all this and at my age as well (rolls eyes, te he). Talking of tired, what the hell am I playing at, it’s 11.15pm!! Is that sirens I can hear, MS Police, ooh noo !!

Well, this sums it up really. I just don’t know what to make of myself lately. Physically, I feel better than I have done in a long time; I still have my mainstay symptoms, fatigue, sensory stuff, weakness etc etc. but I feel stronger and my walking has resembled a near normal person and I am thrilled. My bladder is a bit strange though….

Cognitively on the other hand has gone wonky. I gave up shopping yesterday as I couldn’t think straight so I gave up and carried on last night (not much better but hey). My injections are hurting so I now have anxiety build up every week, even my blood tests are bloody painful and the bruising!!

As anyone who has read my posts before, I am animal devoted to the max. My vet job on a Saturday is the only reminder I have left that I can a, hold down a job and b, be helpful in a workplace setting. On Monday evening, just before I finished my jacket potatoes, one of the neighbours knocked on the door and asked if I could come and look at a Fox as they had heard I am a Vet! I wish!!!!
Anyway, I went outside and found a fox cub, with what I thought was around 6 months old. He/she was clearly paralysed had some laboured breathing, probably from shock. There were a lot of interested kids hanging around and it was turning into a bit of a circus, I was half expecting press to turn up!!
I got an old wicker basket, towels and old bed linen. The Fox tried to get away but just lay down and let me scruff and pick him/her up whilst supporting its bottom. The Fox was beautiful, young and something out of most childrens dreams. I became very emotional because at that point, I was cruelly reminded of what this disease is trying to take from me. I really find it hard to put into words just how much helping animals on whatever level means to me. It really is who I am and it is a petrifying thought of how it will affect me when I have to walk away from it.
I came home, called my surgery and luckily the Nurse was still there and I could go down, I thought there was no point ringing the RSPCA if my Vet could see it. I took my son, who wanted to go so much, I think he may have caught the bug that mummy has!
I went into the consult room with my Vet and left my son outside with the Nurse, Robyn, lovely woman. He assessed the Fox and unfortunately the injuries sustained were untreatable. Looked like trauma to spine, nasty and extremely painful. Like with all times with euthanasia, any animal that turns up at our practice is loved and cared for right up to the last moment. I am very lucky to be part of that and share it with great professionals.

I went to sleep that night very troubled. Counselling didn’t even come into it, I can do counselling, but when something stirs such strong emotions in you, ignoring it becomes impossible. That dear little Fox gave me a reminder of who I am.

To top it off, I saw my Neuro who still wants me to have an LP!! Damn!! I thought I had got away with it. He put the request in February, so he was not impressed at all that I hadn’t received an appointment. He sent me for blood tests that I would have had at the same time as my LP so it wouldn’t be a fruitless visit. He apologised, we grinned at each other (a knowing grin) as I blumin knew it was a waste of time. I left, went for bloods which as I said before, hurt!
Oh, I nearly forgot, Physio went well 🙂

This is where it gets truly bizarre; in a tale longer than anyone can endure so I won’t go there, my Vet has started treating me like a human being. He has actually responded to messages, texts and emails (work related) and when I’m at work, he has spoken to me and with, shock horror, eye contact!!
Not really bizarre, more like a miracle!